Weekly Taxol group
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HI littlebee... welcome to the group
I found Taxol to be much more manageable than A/C, though it's true everyone handles it differently. I found a lot of help in reading back through all the old posts on this board (I know, there's a lot!), but it'll give you a sense of what others have gone through and what you might expect. My highlights:
* My primary SE is peripheral neuropathy, and it got worse as I went along. I used L-glutamine powder (mixed in fruit water), B6 and B12 vitamins, and had weekly hand/foot massages. I can't say definitively that any of that worked, but maybe it made it not as bad?
* Fatigue was pretty consistent. Days when I was 'go-go-go' I would feel like I hit a wall around 3 or 4 p.m. Not even "i need a nap," but "damn, I'm exhausted." If I built in down time (step away from things, just zone out, do nothing), then I was OK. On those days I didn't, I was more likely to melt down. (I joked with my husband that I was like a 2 year old who didn't get a nap.)
* Sleep. I had a hard time falling asleep, and staying asleep. On steroid nights (infusion night + 2) I took a 1 mg Ativan and 20mg of melatonin. Other nights, I took just the melatonin. Didn't really work consistently though. I can't wait to sleep.
* Dryness. Taxol dries everything out. Everything -- my feet started peeling (used Eucerin cream 2x day and that worked beautifully). My nails started peeling (used OPI nail envy + cuticle cream every day). My nose is all boogery-bloody (I sleep with a humidifier now). I generally drink 80oz of water with ease ... and I'm still dried out. So hydrate, hydrate, hydrate!
I had a few "weird" issues that I was able to search around here for, and got some mental relief (I had sharp pains in my upper right chest ... probably costochondritis or reflux, after an EC visit ruled out heart issues; I also had UTI-like symptoms on day 3 pretty consistently!).
Hang in there. This group of ladies on this board are amazing resources.
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Hi littlebee!
Welcome! So far I have only had 3 of 12 taxols (I do weekly), so I can really only speak for that. For me so far taxol is SO much easier to handle than AC. I got extremely sick from AC though for almost the entire two weeks, so it sounds like I had a different experience than you. I have started getting mild neuropathy, but so far it is not too bad. I know it gets worse as the treatment continues. So far fatigue has been super manageable and the worst on days 3-4, but NOTHING compared to AC. So far I have not gotten too many aches from taxol like I know some people have. One thing that has happened though is that the taxol has really affected my blood counts. In two weeks my WBC has gone from 12.7 to 2.8 and my ANC from 9 to 1.9. I have also noticed itching and drying of the skin in my hands/arms. Best of luck to you!
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Hello ladies. Today I finished Taxol. Seemed like ages ago I started this chemo train but finally brought it home today. Chemo lasted 6 months. I did AC first and that kicked my ass. Taxol was much easier. Just want to say to anyone starting this journey or on it, it is not pleasant but it is doable. I managed to work the entire time and only had to call off work 1 time. I even worked on Fridays from 6 to 2 and had chemo after. For me work took my mind off of cancer. I will not let it define me. In the beginning I read everything I could and came to this site daily. Not saying that that's a bad thing but you have to live life too! I check in from time to time. And I will start to read up on the radiation pages.
Chemo has put 20 pounds on me, robbed me of my hair, and now I'm beginning to get neuropathy in my left heel of my foot. Good news is my hair is coming back! I will start diet soon! And neuropathy comes and goes! Hopefully it goes away for good soon!
Good luck to all of you! You can do this!!
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Hope, sorry for the late reply. I'm one of the fortunate ones who have had little problem with side effects from weekly Taxol so far. No nausea (the pre-meds actually make me ravenous and I'll eat everything in sight during and after chemo), I did gradually lose about half of my hair and eyelashes but still have my brows (hope I don't jinx myself). I get blood clots in my nose, but not nose bleeds. Fatigue is a big problem for me, but I don't blame that entirely on the chemo. My skin is dry but so far my nails are okay. No real problem with neuropathy (I did have a problem in one heel for a few weeks when I first started,but it went away and hasn't been an issue since).
I'm Stage IV and my cancer is advanced, so it can be hard sometimes to tell if a new pain or other problem is a side effect of chemo, the cancer (bone pain), my pain meds, or sometimes another medication. It's hard for me to tell if even the fatigue is due to chemo or something else. I have been a lot more fatigued the past few weeks than I was when I first started chemo. BUT...a few weeks ago I finally got my port put in (I was initially told I would only live maybe two months if my tumor didn't respond quickly to chemo, so I waited until I was sure I was going to live longer than two months before going through surgery). The port surgery took a lot out of me, and two weeks later I was still absolutely drained. At first I blamed it on the surgery, but then I realized it was lasting way too long to be just that. I was waking up in a complete fog and it took hours before my head would clear. Some days my face was swollen. I felt absolutely horrible and thought that either chemo or the cancer was finally catching up to me. Then I remembered that the only new-ish med I was taking was the anti-depressant Paxil, which I take at bed time. I skipped it one night and felt a bit better in the morning. I've been off it 5 days and have been feeling better every day. I actually felt (mostly) normal when I woke up this morning, so I'm pretty sure the Paxil was the problem and I'm going to talk to my Dr about trying something different.
Same with pain meds, I'm on morphine, gabapentin and fentanyl patch and they all have their own side effects. I had a horrible problem with constipation when I first started chemo, but some of that was also due to the pain meds. Taking Senokot-S every day took care of the problem and had me on a regular schedule, but about 2-3 weeks ago the Senokot was too much help and I had to stop it completely. Now I don't need it at all. Over that same time frame, I've reduced my morphine from every 4 hours to every 8 hours and now every 12 hours, so I think it was the morphine causing most of my constipation.
My second round of Taxol was completely different from the first round. The pre-meds had me bouncing off walls the first 4x round, I felt like Wonder Woman, according to my husband I never stopped talking, and I found it very hard to learn how to sleep the first night after chemo. I actually looked forward to chemo because I felt so good for two days due to the steroids. I guess I built up tolerance to the benadryl and steroids because during the second 4x round, I never got that Wonder Woman feeling and often took a nap a few hours after chemo.
I start Round 3 on Tuesday, so we'll see what it brings.
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JenRuns - I’m sorry you experienced those side effects but thank goodness i’m not alone in the weird UTI-like symptoms on day 3! My doc didn’t seem to think it was a side effect but out of the 3 treatments it’s been pretty dang consistent. Anyway, thank you for making me feel less crazy.
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Littlebee...I had my 2nd infusion of Taxol on Thursday. I've had very little side effects. A bit of constipation with the first round, but Dulcolax stool softener remedied that. A little tired, but not a big deal.
kmajor...Hope the steroids keep the rash away. Sounds like you're doing great with Taxol.
JenRuns...A great rundown of possible side effects. It always helps to know what others go through.
CIW...I've been using CeraVe moisturizer for the dryness/itchiness....It's a bit pricey but superb! I found a $5.00 off coupon this week and grabbed a bottle. At my grocery it's usually around $13.00. I highly recommend it. My oncologist gave me a sample to try. I love it.
Susie...Congrats on finishing chemo. When I had radiation, I found it to be a nuisance more than anything. Took longer changing into a gown than the treatment. And going on a daily basis was tiring. Good luck on your continuing journey.
LoriCA....Thanks for your reply. Wow, you've been going through a lot. I'm also Stage IV with bone mets and BC cells in my bone marrow. After 5-1/2 months of oral Ibrance/Letrozole my blood levels were all over the place. That's when I had a bone marrow biopsy. So, I am now on Taxol for six months. The only other meds I take are an occasional Ativan if I need it. Dulcolax to keep constipation at bay. And Crestor. So, I guess at this point, I'm in a good place. The Taxol has been pretty "kind" to me so far.,,,although, my hair is sooo thin. Almost time for a wig.
Frozentoes...Hope those UTI's stop soon. I've only had one UTI in my lifetime and I don't want another one!!
Off to work at my granddaughters dance studio this morning. Then going to an open house party this afternoon. Tomorrow will be my "rest" day, for sure!
Hope
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Hope, I'm so sorry to hear that you also have bone mets. Big gentle hug for you! For me that is the scariest part of this journey, it's throughout my spine and many other bones. Yes, I did go through a lot those first two months, but things are settling down now and I'm starting to feel much better. All of the pain meds were because my IBC ulcerated and almost my entire right breast became an open oozing wound within days. Also the extremely aggressive tumor got into the brachial nerves of my right arm within days and that was super painful (8-10 pain level until they got my pain meds dialed in right). I lost use of that arm for several weeks and was told I might never regain use of my arm. My fast and dramatic response to chemo addressed both of those problems within weeks, we saw visible results after my first infusion - wound is now 80% healed and I have regained about 95% of the use of my right arm (but I can never again have an IV placed in my right arm, or any other procedure that might affect the brachial nerves). Being able to reduce my morphine dosage this much is a big milestone for me. I hated having to take morphine every few hours and didn't want to end up with addiction problems. Now I'm in the this fight for the long haul and focusing on more than just pain management.
I get so jealous when I read about all of you beautiful ladies having such active social lives while going through chemo. I just don't have the energy for it. I'm hoping that some of it is/was due to all of the pain meds, and that as I continue to wean off them hopefully I will start feeling better about finding my way into my "new normal" life.
Lori
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Hope, thank you so much. It's definately looking better since I started the steroids and it's not itching now. I just wish I knew what I got into to make me break out so bad so I'll know to avoid it from now on. Taxol definately has it's on SE but its definately a lot easier then AC.
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Lori, I’m so sorry that you had such a bad two months, mine started since April, but nothing compared to yours. I can’t do BP or IV on my left arm also.
Jen gave a good SE report, for me Taxol was hard for me, the neuropathy hit me, 2/3 of my feet were numb and my fingers were numb. Fatigue is one of the major SE, I took long nap every afternoon, I’m three weeks after my last chemo, I still need a short nap. I’m happy my neuropathy is not permanent, now only toes are numb and fingers still numb,
Any question you can PM me. I check in daily,
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Mucki, I had a low fever throughout weekly Taxol every time the nurse checked me (weekly). I think our bodies are just fighting like MAD to keep us healthy!
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VL22
Omgosh, I got nosebleeds and runny nose as well. No one affirmed from Taxol but I never had a history of nosebleeds before. I use Ocean Saline wash and no more nose bleeds -knock wood!
Yes around Taxol 8 or 9 I was completely exhausted. But you know what, I had infusion number 11 this week and bounced back energetically. I was so exhausted just around the timeframe you are going through, and I felt the same way.
My hair is growing back white as well, but I’m now starting to see some pigment. I think that’s very normal at this stage, but you know what? iT’S GROWING!!!!
I wish you well over the remainder, it’s normal to be exhausted at this juncture, you will bust out of the clouds. It’s going to happen sooner than you anticipate.
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Lori...I bet you will feel so much better after getting off the pain meds. I'm glad you are fighting this disease to the hilt!! You've had a rough time...but, it will get better. I force myself to do "something" every other day. It forces me to get up and get dressed and feel "normal". Some days are a real effort, trust me. I hope you get to this point soon....sending lots of hugs your way!
CBK...Has your hair started growing back while still on Taxol??? Mine has thinned so much, but I just had my 2nd infusion this past Thursday.
Wishing all a pain free and a good day!!
Hope
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CBK - thanks so much for the encouragement! Spending this weekend doing holiday things has really put me in a good mood. Of course I cried when I saw my my kids homemade Christmas ornaments, but I do that every year! Amazing how’s strong we can be
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Nonahope- I had 4 infusions of the “red devil" Adriamycin efore Taxol, so I was bald as a cue ball going into Taxol; absolutely not a hair. Yes, I began to sprout hair about 3 weeks into Taxol. I was shocked , but they even commented on it at my wig shop. My oncologist told me that is standard on my regime of Taxol to start to sprout!
VL22- Awww so sweet about the kid's Christmas ornaments. Great to have something planned to lift the spirit. I think that's about half the game changer during this ordeal!!
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VL22....Your post has encouraged me to get out some Christmas decorations. I do very little, as I live alone and don't entertain. My daughter has one tree that they put up and it's totally filled with all of the ornaments the kids have made over the years...7 kids...lots of ornaments.
CBK...Wow! That's encouraging news about the "sprouts"...when I brush my hair, it is full of hair...maybe, there will be some incoming growth soon. I will be donning a wig before long!
Hope
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CBK - good for you, I am three weeks PFC I only see a little fuzz on my head they are all white also. Post BC I only had few white hair!
I use Arya gel at night and morning to moist my nasal, I had a bad case of nosebleed during taxol. I still use Arya at night now.
VL22 - how are you doing?
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Paulette- I am doing great today! Finished Christmas decorating, went for long walk with my hubby and dog and watching the Eagles game tonight. My only really annoying SE is post nasal drip. I do so much bette emotionally and mentally on the weekends because everyone is home!
3 Taxols left - ready to move on to radiation. Hope you are doing well and your neuropathy is going away.
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PauletteK- When I talked about nosebleed with oncologist nurse, she acted like I was some sort of anomaly! It makes sense with the loss of hair in nose as well, that nasal passsges could be affected. It was alarming to have that happen and oncologist nurse to suggest it could be something other than the Taxol effect. Ugh.
I started biotin supplements right off A/C not sure if that has helped me at all with hair growth or not. I notice more hair each week, white or not I’ll take it!
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VL22 - I went for my 40 minuets walk today with my husband and dog, then I did my one hour Le pump now we are watching movie. I’m enjoying the time before radiation and praying radiation will be an easier ride. I still have neuropathy on my hands and a little bit on my feet. It has been subsided almost 50% so I will stay positive. I still have hot flashes which I didn’t have much during treatment.
CBK- I think taxol dried up our body so bad, it dried out our nasal also. I have humidifier in my bedroom that helps a lots. I think I should start biotin to help out my hair grow.
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Paulette...I haven't experienced the nose bleeds yet...and, hoping I can escape! I had no major side effects from radiation...just a little tiredness on occasion. Just a nuisance to have to go on a daily basis.
VL22...You sound so good!! I see you are from PA...will you be watching the Steelers tonight? I'm from Cincy, so I'll be watching my Bengals, hopefully have a win at home. Such a rivalry, I hope the game is not too ugly!!
CBK...I think nose bleeds was definitely listed as a possible side effect of Taxol on the sheet I was given by my onco.
Still feeling okay since my Thursday infusion...a bit tired, but nothing major. I fell asleep at 9:00 pm watching TV last night, woke up at 10:00 and went to bed at 10:30. I was up at 5:30 this morning!!
A couple of errands will get me out today....the post office and CVS to pick up prescriptions. Exciting, huh???
Hope
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Hello ladies, I started my first of 12 Taxol last Wednesday, so I guess I officially belong in the Weekly Taxol thread.
So far, so good with Taxol. I was up all night Wednesday thanks to the triple dose of steroids they gave me before infusion, but then was able to sleep for 11 hours (!) on Thursday night. Since then I've felt fine in terms of energy level, but I am experiencing some SEs.
The first is the nasal dryness. With AC my nose constantly ran and it was very thin, almost water like. On Taxol, it's definitely thicker and bloodier. I plan to buy a humidifier today to help. I also swear by Puffs Plus with Lotion, which really helps protect the nose from drying out after all those wipes.
The second is that beginning on Friday, I started experiencing random shots of pain throughout my entire body. It only lasts a second, but it makes me gasp from the shock. One second it'll seem to target my c-section scar (?), and the next it'll be in my chest. Very odd. Aleve helped that first night, but it's not so bad that it's intolerable so I'm laying off the pain relievers.
I've been slathering on the moisturizing lotion all over my body and nails. I've also gone from taking a shower every day to every other day because I don't need a daily shower now that my hair is gone. :0
FYI, I did ice my fingers and toes. I'm also taking a B6 supplement. I should probably start taking B12 as well. I stopped taking Claritin after AC but wonder if I should go back on it to help with the bone/nerve pain.
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Hi LisaRx - for me, Claritin didn’t help with bone pain on Taxol - my MO said it helps like a third of women. Taxol definitely makes old and new scars ache. I had horrible muscle pain in ribs and chest - for me Pepcid was a miracle drug - I didn’t think it was heartburn, but it was.i mentioned that to someone else on here and the Pepcid helped her also.
The humidifier is a great idea, as is saline nose spray. Cut my bloody noses in half, but still have annoying post nasal drip. I’m on a complex B vitamin and have no neuropathy issues.
Hope Taxol goes well for you and fast
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LisaRx....I, too, only bathe or shower every other day. I swear by CeraVe moisturize lotion. A bit pricey, but well worth it. My onco suggested Claritin on a daily basis for the bone pain. I haven't had to take it yet, as I haven't really had "bone" pain, just joint/muscular aches. Tylenol takes care of those.
VL22....I've never had the heart burn, but I know Pepcid is one of the pre-meds they put in my bag before my Taxol infusion. Maybe, that's kept it at bay for me?
Hope
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Welcome LisaRx!
Ohhh you are feeling what I call the “zingers”. Since I had a bilateral masterectomy with reconstruction, I attributed the “zingers” to that and nerve endings coming back. I never really mentioned them to MO because they are very brief, but nonetheless alarming. Occasionally I receive a zinger right mid-chest, that’s a little scary.
Re: Body aches, they were very mild and more pronounced when I had to have 2 weeks of neupogen shots when my wbc dipped around Taxol #8 and 9. Those body aches centered around my upper rib cage around my lower back and my tushy. Claritin helped during WBC boosting with body aches, didn’t take otherwise and rarely needed anything for aches besides an occasional Tylenol.
Ocean saline nasal spray stopped nose bleeds and thinned outnose mucous for me substantially. Now my nose runs more, but that’s much more preferable than the former!!
My MO never suggested B complex vitamins for neuropathy prevention. And I was never informed about Taxol nosebleeds. Something to mention on my follow-up appt. this week for Taxol #12!
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LisaRXCincinnati-- I was on weekly Taxol over the summer. Sinus dryness was one of my SEs. I used Ocean saline spray, too, and also used Ayr Gel to keep the inside part of my nose moist.
I had bone and joint pain as well. I took Claritin and Aleve to quiet that SE
Best of luck to you during Taxol
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Lisa - the random shots is one of the SE, I got that from time to time during taxol. I got that on my legs, in fact I still experience this shots and I’m 3 weeks PFC. taxol dried Up my body, I shower every other day also.
Nonahope - Pepcid really help out heart burn or acid reflux, I got major acid reflux problem during taxol. There was days I can’t eat and finally I figured out is acid reflux.
VL22 - you should be finishing soon, send you prayers and hugs.
Best wishes to all of you! 💪💪💪
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So funny. Today, I was asking my doc about the nasal dryness/bleeding. Taxol is known for drying out the mucas membranes. She suggested a nasal spray, staying hydrated, and Claritin. So, pretty much everything we’re already doing!
So, keep on trucking, ladies!
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Morning all! I start 12 weekly sessions of Taxol next Tuesday. Having picc line on Monday. I was wondering if people could give me rough idea of what to expect, and when. My main fear is weight gain as put on 4 stone last time (23 years ago!) But when an I expect hair loss or down days. Thanks xx
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Joankleish: I just finished my 6th taxol Tuesday. I shaved my head before the fifth treatment since my hair was falling out more each day.The anxiety of wondering how much more I would see in my hands every time I washed bothered me much more than shaving it. I gained 7lbs but no more. My diet was fluctuating between eating to ease diarrhea and prevent constipation. I started to take a probiotics which I feel helped greatly. Side effects weren't to bad until after my 3rd treatment. I developed very sore acne on my face which I still have. I have religiously rinsed my mouth several times a day with a diluted salt water baking soda solution and I thinks it helps a lot.
As far as the actual chemo, they are very good explaining what they will do. I had different side effects during each treatment from stomachs pain, to burning in my lady parts from the steroids which was very temporary. Here in the states there is a saline solution shortage so everything is injected directly into my port which intensifies side effects. They inject Benadryl, pepcid and a steroid. These are pre meds. They will monitor you carefully on your first couple of treatments. I have to admit I have slept during each of my treatments because of the Benadryl.
I hope you'll be fine. I don't want to down play the side effects but I'm one of those suck it up and move on people so I just handle things differently but even I have my moments when I'm tired of it all.
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Joankmcleish, the weekly Taxol regimens are much more tolerable than the more concentrated treatments of the past. They've learned that the SEs are mitigated when they lowered the dose and administered Taxol weekly instead of bi or tri-weekly. The most common SEs are nasal dryness, neuropathy, and fatigue. Some people believe that icing your hands and feet during treatment helps with the neuropathy, and others believe that taking a B-complex vitamin also helps. Some people also take Claritin for bone pain. (Check with your oncologist).
I've only had one treatment so far, and I experienced a lot of energy the day of infusion (thanks to steroids), and then lack of sleep that night which caused me to be extra tired on Thursday. I took one anti-nausea pill on Thursday, but not sure if I was nauseated from the chemo or lack of sleep. On Friday, I started getting sharp pains throughout my body that lasted for only a second, but nothing intolerable. I took Aleve and it helped.
My appetite has been normal, and I haven't gained weight because there's no need for steroids on subsequent days anymore. Food tastes normal. You need to drink tons of water to stay hydrated, and you need to eat lots of greens and protein to help stave off anemia and low-RBC and WBC.
Some people who had AC chemo first actually start growing hair back on Taxol, so I'm not sure if hair loss is complete as it is with AC. I'm not sure I'd shave it ahead of time, but maybe other people who just have Taxol and Herceptin might be more helpful.
Good luck to you!
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